ENT

A few weeks in

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I’ve been posting a lot less frequently, I think, because I think we’re really starting to run low on big events. We’re definitely on that road that we were pining for so badly a few months ago.

Alex had his second mapping session last week. It went well, and went much like the first. The audi chose a few different electrodes to map for each of his ears and increased the stimulation until Alex would react (cry), then immediately turn the stimulation off and mark where that reaction took place. She felt that Alex’s right ear was already pretty close, so more time was spent on his left ear. We were given four more programs to move Alex through. Our next appointment isn’t for another few weeks, but this next one should be exciting, because they’re going to put Alex into a soundbooth and test his reactions. That should give us an audiogram which will give us a semi-decent idea about what sort of sounds he can hear and how loud he can hear them at, but it’s still a little bit of guesstimating since Alex isn’t at the point yet where he can say that he picked something up. So that’ll be interesting.

MORE interesting, though, is how Alex is doing with his CIs in practice.

In short, he now reacts to sound. It was subtle at first. I’d make a loud noise and he might turn slightly, but I’d say there was a good chance that I was making it up in my head. I’ve been very skeptical given that we thought he could hear prior to his formal diagnosis. But no, not anymore, this is for real. After his last mapping session, something seemed to click. I’d say that about three out of four times, if his name is called and the environment is relatively quiet, he’ll stop what he’s doing and look for the sound. I doubt that he gets that when we say “Alex” that we’re directly referring to him, but frankly, who gives a shit at this point. His brain is at least starting to get the concept of sound and Alex is clearly making the connection that when his new sense goes off that something in his environment is probably happening, so that’s… well, it’s amazing. I was braced to not see any results for a few more months.

I told Shannon that in a way, I feel like Alex is almost “whole” again (running under the assumption he had hearing prior to receiving ototoxic drugs). Yes, he’s behind, yes, the quality of what he’s getting isn’t nearly as good as what those of us who have normal hearing experience, but… this kid now frequently responds to us making sounds.The simple act of seeing him look around for what made that sound relieves so much of that fear and anxiety that wrecked me over the past year.

He isn’t babbling yet, but that’s not really expected for another few months. I’m fine with that.  He’ll only be fourteen or fifteen months by that point, and it’s not like his peers are going to be reciting Shakespeare to each other.

Shannon ran to Target last week and picked up all of the toys that our therapists use for Alex’s speech session. I’ll probably describe it in detail, but the idea is you have two planes, two cars, two horses, two baby toys, etc. You associate a few words with each of the toys and repeat them to the kid over and over. The words should use LING sounds (which cover the spectrum of speech sounds). At first, the kid just soaks up the sound and makes the association that what he’s hearing, words, have meaning and relate to these toys that are in front of him. Eventually, the exercise will get to the point where if we just say “up up up” while Alex has a plane in his hand, he’ll move the plane up in the sky without seeing us actually do it to demonstrate that he’s only using sound to get his cues. Our therapists didn’t tell us that we needed to do it, but what they do there is so repeatable that it seems silly to NOT do it. We’re essentially giving him three times as much directed therapy as he would’ve received otherwise, and on top of that, he seems to enjoy it.

Speaking of therapies, I just signed the paperwork to get Alex bumped up to getting both speech therapy and teacher of the deaf therapy once a week instead of once every other week. Now that Alex has his CIs and is demonstrating that he’s getting something out of them, we’re all about maximizing the benefit that he can get. Our physical therapist was over last night and re-affirmed that Alex is doing fine physically. She’s guessing that he’ll be walking by late October or early November, and at that point I think she basically ducks out. We still don’t have any concerns about him physically. Haven’t noticed any balancing issues. Alex still likes to bob his head occasionally, but it’s become very obvious that he’s doing it just for fun. He’s also waving now, which is also awesome. Seeing all of the communication paths getting built is very cool.

What else.

Our audiologist has coordinated with our ENT to request an FM system and I know that our service coordinator has the paperwork for that, so hopefully we’ll get that soon and have another tool at our disposal if we’re in loud situations.

People staring at Alex for a little too long still bothers me, but not as much as it was before. Much of that, I’m sure, is due to the fact that I’m not looking for people who are staring, so that helps. It’s also nice that there are still folks who still stroll up and say “he’s adorable!” and the like. Regardless, my sensitivity to it is starting to go down, especially now that we’re starting to see some of the very real benefits. As always, I’m completely of the mind that the bulky and easily visible setup he’s using today is merely temporary, so that’s a positive thing to hold onto.

The headbands are still working wonderfully. He still tears them off his head occasionally, particularly if he’s bored, but the whole thing is still much easier than dealing with his hearing aids and, in general, just not really a big deal. No issues with the devices or any of the equipment. I can change the batteries out in like twenty seconds now. We definitely have a manageable groove now.

Daycare is still working out well so far. Every time I’ve picked him up he’s had his CIs on, and every time I ask how he did with them today I’m told that they were fine, had to be replaced a few times, but no major issues. I like that he’s “mainstreamed” already, even though it’s not actual school.

I can’t think of much else to jot down here besides that I think Shannon and I are definitely feeling pretty hopeful and happy with how things are heading. I don’t think I’ve had a “wah, he’s deaf” moment that was strong enough to put me in a garbage mood for a few weeks now, and I’m ecstatic with how he’s already reacting. His therapy team remains awesome and I feel like Shannon and I are doing a good job with him to make sure he’s getting all of the support needed to maximize his benefit with the extra therapies, so the buildup of momentum I’ve mentioned before is still in full effect.

Eventually I’ll start recording some of his hearing moments and putting them up here to show more concrete examples of the sort of stuff I’m talking about, but that’s it for now!

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Surgery Date 2.0

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A few things have happened this week, but I think I was just a little tired of talking about it to write.  Here goes.

It was obviously a pretty rough weekend, emotionally. Alex, however, was a champ. He was practically back to his usual self by the evening of his surgery day. By Saturday, no sweat. We took his bandage off and it really didn’t look too bad, though it was still tough to look. The inside of Alex’s ear bled all weekend, which we were prepared for. Hanging in limbo without having another surgery date was awful. His post-surgery care was pretty easy. He had an oral antibiotic twice every day and eardrops twice a day as well for the infection.

My plan on Monday was to call the ENT’s office during lunch and ask about when the ear bleeding would stop and, by the way, did you guys figure out a surgery date yet?

Shannon and I chat online every day at work, and we both agreed that we wanted to get this done by July.  July had to be the month, and if it couldn’t be accommodated, we might have to email around to New York, Cleveland, etc to see if we had any alternatives to get this kid his ears.

About 15 minutes before I was going to call the ENT, my phone rang. It was the office. I was told that we had a new date. The all to familiar sensation of my heart skipping a beating hit again, and then I heard “July 29th.” I was pretty happy with it, all things considered. It was about seven weeks after Alex’s first surgery. As a bonus, his surgery will start at 8:00 am, so we won’t be waiting too long. Not as if that would really matter; if it didn’t start until 4:00 pm and they wanted us there at 6:00 am we’d do it in a heartbeat just to be done with it. It’s nice that we can at least say that it’s going to happen (hopefully) next month.

We also had our post-surgery appointment with the surgeon. I could write for miles about this, but the quick version is that Alex is healing well. The blood coming out of his ear tube (on the side that he had his partial surgery on) is still fine, and it’s slowing down. Apparently Alex’s little surgery surprise is such a rarity that it’s only happened to our doctor twice in the span of fifteen years. Conservatively figuring one surgery every other week, the chance of this happening to Alex was roughly .5%, or 1 in 200. This kid. We thanked the doctor for getting us back into the schedule so close the minimum of six weeks and tried to show our general appreciation. When asked if we should do a preventative course of antibiotics or anything to help lessen the chances of another surprise, we were told we probably wouldn’t have to worry about it due to the sheer rarity of it happening weighed against the possible detriments. Fair enough. We have another appointment with him a few days prior to the surgery where he’ll hopefully take a good look at Alex’s ears and, if action needs to be taken, have enough time to do it prior to surgery date 2.0.

So we’re idling again, which sucks, but at least we’re on the calendar. We’re still ahead of the curve in terms of getting Alex his implants early enough in his life that he can take full advantage.

Now to twiddle our thumbs for seven weeks.

The Pre-Surgery Consultation

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Last week we met with our ENT who will be performing Alex’s surgery a week from this coming Friday (wow). We weren’t really too sure what to expect from this, but figured it would just be the surgeon giving us the quick breakdown of the procedure and for us to pick out all of Alex’s CI equipment. I asked in advance if Alex actually needed to be there and the receptionist said “yes,” so we brought him along.

After the typical 15-20 minute wait, the doctor came into the waiting room we were huddled in, greeted us, and simply asked if we had any questions. That caught both Shannon and I slightly off-guard, as we thought he was going to basically walk through what the surgery day would be like and ask questions based off of what he said. We’ve already done a great deal of research on the subject so we didn’t really have anything specific to ask, so Shannon asked the doctor if he could describe, in general, how surgery day would go. His response was “It’s going to be a long day,” with a smirk. We were both a little bit annoyed with that response, but I didn’t actually hold it against him for saying that. This is a guy who does these surgeries on a weekly basis and sees countless patients. What’s a scary five hour surgery to us is just a mundane procedure that he’s done hundreds of times to him, so I’m sure that’s sort of a natural response. Of COURSE it would’ve been nice if he had recognized that he had two concerned parents in from of them and treated the question that way, but… I get it. We’re quickly learning that doctors operate efficiently by being clinical. It might seem cold-ish at times, but the only thing that matters here is that we’re with a great doctor who’s going to get the job done. That’s all that matters at the end of the day.

We didn’t really have too many other questions. He noted that because Alex has ear tubes that we’d probably see some blood draining through them after the surgery and to expect that (good to know), and that Alex would LIKELY be able to be taken home the day of the surgery. That’s also huge. He’s going to place the magnet (the circular part of the CI) about four centimeters behind his ears, which I actually prefer to some of the other setups I’ve seen where they’re a good three or four inches away. The only other thing I can think of that he said was that Alex would likely be the youngest patient there, and therefore would be the first to get his surgery, which is slated to take roughly five to six hours. We thanked him again for pushing our insurance company to pre-authorize Alex’s surgery and asked about when we’d need to pick out Alex’s gear and accessories, so he sent us over to one of his administrative folks.

Shannon and I have been very interested in how the accessory process would go, since we couldn’t really get a good dial on how it worked in general. We knew that you got to pick out a few things, but weren’t sure if you were capped at a certain cost and what would come with the CIs out of the box. Oh, and to clarify – the accessories we’re talking about are things like molds that cover the CIs so that they can be used under water, remote controls that show the status of the CIs and can switch through their various programs, audio cables, that sort of thing. I had tried looking at Cochlear of America’s website to get a feel for this, but for whatever reason, I could never get it to show up properly in the browser.

Anyhow, choosing the accessories was relatively easy. Most of the stuff we wanted to get came standard, we got to pick out a remote, and we even get to select two additional accessories in a year, which is a nice touch given that there’s going to be some interesting wireless stuff coming out for the CIs that Alex is getting. We went with black CIs, but they can be skinned easily if he wants to customize them down the road. We were pleased to learn that a new waterproof accessory that Cochlear had just come out with would be included in the package for free. Nice to know that Alex will be able to enjoy sound when we take him to pools and the like.

And that was about it. I would’ve preferred if the doctor didn’t just ask us if we had any questions and had given us a quick breakdown of the procedure and it also would’ve been nice if we could’ve really studied the accessory list at home, but overall it wasn’t bad. Oh, and Alex was never looked at or checked out, so he didn’t ACTUALLY need to be there. Would’ve been nice to have just let the little guy stay at home, but not a huge deal.

Next time we see the doctor, it’ll be the day Alex goes in for his surgery. It’s exciting and scary at the same time, but we’re eager to just bring him back home and start the healing process and get this kiddo moving.

Ear Tube Surgery

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Playing catchup again. I’m not going to drill into this with way too much detail since this one is such a common procedure.

The ear tube surgery was pretty much a cinch. We ran through the hospitals admission and got upstairs to the minor procedure room pretty quickly, and the nurses told us that we’d be the first surgery of the day. Great! We only had one waiting room we had to hang out in, and the procedure room was right across the hallway. We only had to wait for about an hour until we met with the anesthesiologist, who told us that Alex would only be under for a few minutes, it would be gas-only (no IV), and that he might fight it a bit when the mask was put on him. We could go in with him when they put him under. OK, no problem.

A bit after that conversation they came for Alex. He was given the gas and fought it a LITTLE bit, but he was a trooper about it. No crazy spazzing or crying from our little guy. It was still very emotional to watch him go under, but it was a little bit easier this time since we had a good idea of how he reacted to anesthesia. Soon he was down and we got kicked out of the room.

It was only about ten minutes later that they wheeled him out and into a recovery room. We had to wait another ten minutes or so to give him time to wake up. As soon as he had, we were allowed into the room. He was crying and clearly a little upset, but he wasn’t in horrible shape. He also hadn’t eaten for something to the tune of seven hours at that point, so that didn’t help.

Our ENT popped out at some point (I want to say it was between the surgery and the time we went into the recovery room) to have a quick debriefing with us. He said that everything had gone fine, and that it was a good thing we’d had the tubes put in since a lot of gunk did come out. Of course, I had to ask if getting rid of that would possibly have any impact on him going for CIs, but he said no. It was exactly what I was expecting, but hey, had to ask. Past that, he gave us ear drops that we were to put into both of Alex’s ears three times a day for the next three days and not allow any water to get into his ears for the same amount of time. Past that, he’d be back to his normal self.

We were home way before lunchtime. Alex took two big naps. We cleaned a lot of gunk out of his ears for the following two days and he certainly hated his ear drops, but the whole exercise really wasn’t too bad.

Past that, not much to write about. Shannon and I were both pretty relaxed going in, though we both commented on how much it sucks that this poor guy will have gone through three bouts of anesthesia before he even turns one. It has to be done though, and we’re happy to have that one behind us. His next date with the hospital (knock on wood) will be his actual implantation. That’s going to be much harder to deal with, but I really think it’s going to be the climax of the scary part of this leg of the journey of Alex’s deafness.

Mission 6/6: Success.

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Yesterday Shannon got a call back from the insurance person she had spoken to a few days ago with the wonderful message that we had actually been pre-authorized. This means that Alex is now a go for his 6/6 surgery and will have a few extra months worth of hearing than the current FDA-recommended minimum. By the time Alex goes to his oral-deaf school, he will already have eight months of hearing under his belt.

I think I’m still in shock. I was fully expecting that we were going to have to file a formal appeal. We were all ready to start pushing things and calling whichever party had the ball in their court until we had our approval, but it wasn’t necessary.

I wish I could say what EXACTLY got us pre-authorized if it would help anyone else, but we can’t be 100% positive. Our theory is that the pre-auth department opened the case, saw that our surgeon had already stated why we wanted to go in early (I want to get whatever he sent in and post the important bits here), and also saw that Shannon and I were all over the process and clearly were ready to appeal hard, and decided at the end of the day that it’d be more cost-effective to push us through on the basis that they’d be paying for the operation a few months down the road anyhow.

So we’re thrilled. Alex is going to hear when our family and friends sing “Happy Birthday” to him in September, and he’s going to be soaking up sound when he’s still young. This is his best chance to have age-appropriate speech at the youngest age possible, and even though therapy and our work with him is going to be a huge part of the battle, it all requires the raw materials to be in place and now we’re in position.

Next steps: We have an appointment scheduled with our ENT / surgeon in mid-May to ask any questions we might have about the procedure and pick out what sort of accessories (remote control, extra cables, batteries, etc) we want to get along with Alex’s cochlear implants.  We’re still thinking we’re going to go with the Cochlear N6s. I want to see the full list of accessories we can get for it as well as an idea for what the limitations are on how much stuff we can get, but Cochlear’s website is basically a pile of shit so… we’ll see.

Thrilled to be in this position, though. A lot went down this week.

Mission 6/6: Part 3

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I’ve gotta say, I’m actually relatively happy with how things have been moving up to this point.

Yesterday I called up the ENT to see if they had gotten a response back from BCBS in the form of a denied pre-authorization. Shannon called BCBS directly a few hours later. It turns out that it was a good thing that I had called, because even though they had sent everything in, BCBS wasn’t going to process it because of the initial “stop” that the ENT’s office put on the pre-authorization when they were incorrectly told that any failed appeal would tack an entire year onto Alex getting his implants.  So when the ENT called the insurance company to get a status, they were able to hammer that out and make sure it WAS being processed.  We’ve been told that will take something to the tune of 72 hours to turn around, so basically this Thursday. Additionally, we were told that the ENT actually sent in material explaining why we wanted to go in early.

Good things taken from that:

  1. It validates our strategy of calling over and over.
  2. The ENT didn’t just tell us “We haven’t gotten a response yet,” they followed up with BCBS and actually got a status and fixed the issue themselves rather than waiting for us.
  3. The ENT is ALREADY sending in the information on why we’re trying to get Alex implanted early instead of just waiting for the denial.

I’m probably saying this too early, but I’ve been impressed and grateful for the proactivity of our little team. Our audiologist sent us her drafted recommendation to be sent in for any appeal process after she integrated the verbage “medical necessity” at our request, and even asked if we wanted to make any changes or tweaks.

These might all seem like small kindnesses, but they really do add up, and in the healthcare industry where you’re asking for someone to go the extra mile for you, it’s nothing short of great service.

Shannon and I have a very small hope that the pre-authorization will actually be accepted based off of what the ENT sent in as well as just looking at the calls that we’ve made in the past week. The logic would be that given what we’ve already done, they’ve gotta know that we’re going to appeal vigorously, so maybe it’s worth accepting it now and losing whatever administrative costs and headaches would be associated with the appeals process? It’s a very small hope, because at the end of the day, we’re talking about insurance. They’re going to put up whatever walls they can to see if we just lose interest, but maybe they’ll weigh that against the appeals process we WILL put them through.

On the ear tube front, Alex has an appointment for next week. It’s just an office visit, so no procedure will actually take place, but the good news is that we’d still have all of May to get the procedure done. I asked the office person I was speaking with if she could make note that we need to have the procedure done prior to June, and she said that that note was already on our case, but she’d put it in again. Obviously when we go in, we’ll make note of that yet again and be as nice about it as possible.

I think that’s about it for now. Probably more to come on Friday.

In other news, Alex has made some pretty good strides lately in the physical development arena. He’s sitting up on his own for longer and longer periods of time, and he’s now rolling from back to belly. We’re hoping that means crawling soon-ish. Alex has a physical therapy appointment tomorrow. We’re hoping to ask the therapist if she might be able to write something up about the benefits of to Alex’s physical development if he has a sense of hearing earlier than later. I also want to ask her about Alex’s balance again and make sure that he’s doing well on that front. I did more googling about Usher Syndrome (where you’re born deaf or hard of hearing and slowly go blind) and balance issues are often associated with it early on. Alex is doing DECENTLY sitting up and once did it on his own for a good nine minutes, but I’d like that reassurance if we can get it that his balance is in good-ish shape. We’ll get confirmation once his extended genetic results roll in, but we still have weeks to go for that.

Now that I think of it, we also have an appointment with our teacher of the deaf tomorrow as well – I’ll probably ask her if there’s anything she can write up, though I’m not sure what that would really look like. Won’t hurt to try.

That’s a wrap for now.

Mission 6/6: Day Two

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Actually went pretty well.

For whatever reason, the ENT called Shannon instead of me, but the news was still what we would call “good.” They finished submitting the pre-authorization on Wednesday to insurance, which is great. I had a weird feeling that was going to slip by a week or something.

More importantly, they told Shannon that they (meaning the office and the doctor) are completely planning on filing a petition. Since we didn’t know if the doctor would have any sort of issue doing that due to time constraints or prior experience, it was really relieving to hear that they’re on board with fighting to make Alex’s June date a reality. While on the phone, Shannon told the office that we had also reached out to our audiologist and were getting something from her for the appeal and asked if there was ANYTHING else we could be doing. The person on the line said “no,” but I think I’m going to start compiling that list of research demonstrating the benefits of early implantation. I’d LOVE if I could find something that would imply that BCBS could potentially save money down the road by going in early, but that’s probably a stretch goal.

Next steps are to find out about getting Alex’s ears drained out, but I’m almost afraid of doing that too early for fear that the fluid gets drained in the next few weeks, only to come back right in time for the surgery. We’ll see how that goes, but the most important thing right now is to know that we’ve successfully rallied the troops. Starting this Monday I’ll start hounding BCBS about getting the pre-authorization through whether it’s accepted or rejected, and I also need to ask about the appeals process.

Kid wants to hear.

Mission 6/6: Day One

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When I write this blog out, I think about it from the perspective of what I would’ve wanted to read when we had first found out that Alex was deaf, to know the details of how the whole process really worked instead of just reading vague statements about how there were lots of appointments and lots of healthcare struggling. That’s definitely not a jab at the myriad amount of people who’ve currently written about the same topic, but I always appreciated it when someone went into a little detail, so I’m going to do the same thing here by giving the day-by-day events whenever anything happens on our mission to get Alex implanted as early as possible. Our current goal is to to try to keep Alex’s current surgery date of 6/6, and if that has to slip, the very next available date possible.

After all of the events that transpired on Tuesday, we decided to give our ENT until Thursday to finish submitting the pre-authorization before starting to call daily until it was done. We also wanted to start working on the appeal and gathering as much material as possible for that. To that end, we emailed our audiologist, who agreed to write something up for us on our behalf. She probably thinks it’s just a small thing to do, but we definitely appreciate the hell out of it, since her professional and veteran opinion carries weight. Anyhow, she said she’d try to get that out to us by Friday.

I left a voicemail with the ENT this morning saying that I wanted to confirm (gotta use that word) that Alex’s pre-authorization for surgery was sent in and to also ask if we could go with a different ENT than who was recommended for Alex’s ear tubes given the aggressive schedule. When they call back, if they say that the pre-auth was sent in, I’ll ask about typical turnaround and see if there’s a number I can call to inquire about status, make sure it’s received / processed, let them know that this is six weeks away, WHATEVER I can do to push it along. I’ll also ask the ENT if they can start getting an appeal ready if that becomes a process, offering to help however I can in compiling scholarly articles, mentioning that we’ll have an official recommendation from our audiologist, etc.

I have a feeling that if we’re going to get burned somewhere, it’s going to be when the insurance formally rejects the pre-auth and the ENT doesn’t have an appeal ready to go shortly thereafter. I plan on asking allllll of the details around this, but BCBS’s appeal process can supposedly take around a month to complete, so a quick turnaround between rejection letter and filed appeal is key.

We’ll see how those calls go and I’ll be sure to write about what I learn here.

I’m starting to get the impression between the conversations we’ve had so far and from some responses we’ve had on our Facebook support group that not a lot of parents are too aggressive after health insurance initially denies the procedure. Personally, I can’t relate to that, especially given all of the research about the benefits of early implantation and just the raw prospect that he could be hearing and soaking up sound sooner than later. I’m not sure if we’re forging new territory locally here or not, but we’re definitely going to put up a fight.